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        Cluster Headache Help and Support >> Medications, Treatments, Therapies >> How Do You Find a Good Neuro?
        
(Message started by: serendipity on Aug 14^th, 2006, 5:09pm)

Title: How Do You Find a Good Neuro?
Post by serendipity on Aug 14^th, 2006, 5:09pm

I've been reading through these threads where people talk about their experiences with doctors who aren't at all informed about cluster headaches. Then I started thinking about all the problems I've personally had over the years with getting the proper treatment, and I'm wondering if maybe I shouldn't think about switching back to a neurologist instead of seeing the same GP I've been seeing for years.

The problem is, how do you find a neurologist who specializes in (or at least has a thorough knowledge of) cluster headaches? Is there a directory somewhere, or is my best bet to just pull out the phone book and start calling neurologists' offices?

Title: Re: How Do You Find a Good Neuro?
Post by nani on Aug 14^th, 2006, 5:16pm

Here's a list of sufferer recommended doctors by state.
http://www.ouch-us.org/chgeneral/doctors.htm

Title: Re: How Do You Find a Good Neuro?
Post by serendipity on Aug 14^th, 2006, 5:24pm

That's great! Thank you so much. Unfortunately, none of them are in my area, but I'd certainly be willing to travel.

Title: Re: How Do You Find a Good Neuro?
Post by nani on Aug 14^th, 2006, 5:28pm

We've got a few people in NC. If they don't post here, try a PM
SandyC, Racer1NC, vig, ClusterChuck...

Title: Re: How Do You Find a Good Neuro?
Post by TxBasslady on Aug 14^th, 2006, 5:38pm

Certainly if you feel that your GP is inadequate as far as treating CH, you should consider finding another doc.

My doc knows very little about CH. However, with printed material from this site, he has a bit more knowledge.

He's not a doc who "would just give me anything", but certainly he's been a willing participant as far as taking the time to read what I take. I like this...and as long as he's willing to learn, I'm willing to stay and let him.

Jean

p.s. Remember that you can always call a doc's office...ask the nurse/receptionist if this doc is familiar with CH...it never hurts to ask...and it's free info.

Title: Re: How Do You Find a Good Neuro?
Post by Bob_Johnson on Aug 14^th, 2006, 10:02pm

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

3. Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

4. http://www.achenet.org/physicians/ On-line screen to find a physician.

5. http://www.headaches.org/consumer/index.html Call 1-800-643-5552; they will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

Title: Re: How Do You Find a Good Neuro?
Post by rhino on Aug 14^th, 2006, 10:04pm

Good question,, how do you find a good neurologist or lets look at another way, what is a good neurologist?
I live in the headache capitol of the world, I am told. Houston TX, I have been to two of the best neurologist in the world,, I am told.
My experance to date is they sit there with a prescription pad, ball point pen and give you this blank stare.
After you "try" to tell them your symptoms, they start writing the prescriptions and we start the medication crapshoot.
Then you get your first visitation bill for $350.00!!
Now when those first meds really don't work, be real polite when you call him back,, we don't want to dissapoint him,, I swear he will get upset and not see you again.
I have had Cluster headaches for over 30 years. I can afford and will pay for the best, I am not dependent on insurance.
Can any tell me what is a good neurologist? [smiley=smokin.gif]

Title: Re: How Do You Find a Good Neuro?
Post by Charlotte on Aug 14^th, 2006, 10:21pm

I did not want to go to the neuro because the only other one I went to was exactly like you just described, Rhino, however, my new doc referred me because of the frequency. It turns out the new neuro is a good neuro. He, too, had the ball point pen, but he did not have a blank stare. I had a typical headache right there, and asked him if he wanted to look at me instead of writing, and he said it wasn't necessary. I thought that was not good.

However, when he finished wriiting, he continued asking questions and refining the information. If he did not undersatnd, he rephrased it until it was clear to him what was going on with me. It turns out he was very good, and is helping me.

One problem I have is cognitive, and he made me a chart exactly how to use the new med. He found my ha to have elements of but not ch or cph, which I really thought was odd, but I now appreciate that he went outside the box and kept working on it.

With the base the neuro provided, my doc is continuing to work on treatment for me so I seem to be improving. I don't even want to mention it because it is so tentative, but things are headed in the right direction here, and I am improving. I may soon have my life back.

I probably got my good neuro because of all the prayers and vibes, but I've got him, and this is what a good neuro is for me.

For those of you in the Northern California mid area, he is Dr. O'Dell, at the Manteca Kaiser facility.

Charlotte

Title: Re: How Do You Find a Good Neuro?
Post by jon019 on Aug 14^th, 2006, 10:37pm

Hello,

It's a crapshoot. I went with GP's for 24 years. They would scurry out of the room after listening to me and come back in with a script pad and a smile. Do I blame them? Yes and no. As has been posted here, med school just doen't train for "headache". What I was looking for was a willingness to work with me and a geunuine concern for my well being. Sometimes got it, sometimes didn't.

After a reappearance and desperation I sought out a neuro. Where to go? I searched the ouch website and found a recommend for a local headache specialist who worked in a pain clinic.

Name Dr Sheena Aurora, Swedish Clinic, Seattle Wa. They got me in in less than a week (have since discovered that is rare and subsequent request for appts take 3-4 weeks. Too long if you are a clusterhead starting a new cycle, sigh).

Anyway, with the trepidation of visiting yet another new (to me) Doc I went in. After describing my "problem" she actually winced (a physical and involuntary reaction that cannot be faked). I damn near leaped for joy! Then she said something I will NEVER forget. "I treat this condition VERY aggressively". You go Doc, I'm on board!
An IV of solu-medrol, a taper of same and 480 mg of verapamil later and I was pain free for 10.5 months. Back in the cycle again and waiting to get in to see her again. Will see (and report) how that goes.

Would I recommend her? Absolutely. Would I recommend doing your homework before going in to ANY Doc. Damn straight skippy.

Realize that you may know more about the beast than almost any Doc you go see. Just be prepared. There are
priceless references to be found here. Use them.

My best,

Jon